In those six days Faye’s story has been headline news across the country. The photographs shared by her equally courageous parents have been shocking and brought tears to many people’s eyes, and put Meningitis B firmly back in the public consciousness. The petition to the government to expand on the Meningitos B vaccination programme has attracted more than 600,000 signatures (and counting), making it the most signed government petition since the system was introduced.

Despite her tragically short life, in the past six days Faye has touched more hearts and influenced more people than most adults can hope to achieve in their lifetime. That’s quite some legacy already.

Yesterday I listened to an interview on Radio 4’s Today Programme given by Dr Sarah Wollaston MP, chair of the health committee in the House of Commons. In her interview, which has been widely reported, she told us “This is a very serious condition but if we’re to run vaccination policy purely on the size of a petition then we would run ourselves into very difficult territory.”

She’s quite right. The petition system is not and should not be a popularity contest.

But parents have not been signing the petition because they wanted to knock the petition to keep Donald Trump out of Britain out of the top spot. They signed it out of one of the most powerful base human emotions – fear; for the most precious things known to them – their children.

This fear is based in part on what Meningitis can do, brought starkly to life by Faye’s story. And based in part on how Meningitis strikes – its seemingly innocuous initial symptoms, easily confused with a host of common and usually harmless (if unpleasant) bugs and viruses. And fear also based in the speed at which Meningitis strikes and does its terrible damage.

But this is nothing new. Meningitis has always been like this, even if it does sometimes take a story like Faye’s to remind us of that.

The fear we as parents feel right now is particularly pertinent because of the context in which we operate. A context where our NHS is stretched, we are told, close to breaking point. Where Junior Doctors – those with whom we trust our lives and those of our children – tell us those lives will be put at risk by contractual changes being forced upon them. Where GP’s appointments sometimes feel like gold dust, walk in services are cut back, A&E departments are over capacity, and where we are told to “Google a rash” rather than put more unnecessary strain on an overburdened service.

The government’s response so far said “When any immunisation programme is introduced there has to be a date to determine eligibility: a decision based on the best independent clinical recommendation to ensure we protect those children most at risk. When our vaccination programme was introduced last year, England became the first country to protect babies from this disease.”

They’re right too, of course. The introduction of the Meningitis B vaccine to the immunisation programme is groundbreaking and should be applauded. Generations of children will have protection from this deadly disease, who would not otherwise have been protected.

A variety of professionals have also said that we must wait to see the real world impact of the vaccine before we expand the immunisation programme.

So why do we continue to campaign? Should we just accept that Faye’s story has succeeded in raising awareness of Meningitis? This is after all a great achievement in its own right.

The problem is that we have a cohort of children who have been forgotten in this picture: at increased risk of meningitis by virtue of their age, but without the protection afforded to those children who come after them.

How long will it take to gather the evidence of the vaccination’s effectiveness? By the time the evidence is in these children will be growing older and out of the high risk age bracket, whilst younger children will have been vaccinated at birth.

Except not all of this cohort of children will grow up…

Some, like Faye, will get Meningitis. Some will survive it unharmed. Some will have lifelong effects as a result of meningitis. Some, sadly, will die from Meningitis or associated septicemia. Not many, true, but too many for me to feel comfortable with when I know there is a vaccine there for them.

This, in my mind, is what we are fighting for. This cohort of forgotten children.

And these are the reasons I believe that the immunisation policy needs to be changed:

1. The government tells us that the most at risk children are being protected by the immunisation programme. This is not true.

The evidence as it has been widely reported shows us that children up to 1 year are most at risk of contracting Meningitis. Yet the immunisation programme launched on the 1st September 2015 only made the vaccine available to children born after 1st May 2015, who would have been aged up to 4 months. So that leaves children aged between 4 and 12 months on 1st September 2015, who we are told are at the highest risk of Meningitis, not receiving the vaccination that would protect them.

This equates to over 500,000 children at high risk, who should have been protected but were not.

In addition, although it is true that 0-1 year olds are the most at risk, 1-5 year olds remain at increased risk of Meningitis, around 4 times higher than the next age group. The JCVI report (the body who advise on what immunisation schemes should be run in the UK) did not actually look at the cost effectiveness of a catch up programme for this age group due to it already only being borderline cost effective for newborns. This is despite the fact that 1-5 year olds cost one third less to immunise, as they only require two doses of the Bexsero vaccine rather than three.

2. We are told that professional, independent advice is being followed. This is not true.

The government green book on immunisation against infectious diseases says that it incorporates the advice for the JCVI on immunisation programmes including MenB immunisation. This document states that infants under the age of 12 months should receive 3 doses of the MenB vaccine at the appropriate intervals. But it also states that children aged between 1 and 2 years should receive 2 doses of the MenB vaccine. By my understanding, this is a government policy handbook which does not reflect what is being rolled out in the real world.

There are approximately 775,000 children born each year in Great Britain. So that’s another 775,000 children aged between 1 and 2 years who should have been protected, but were not.

3. We are told that it is not affordable to vaccinate any children beyond the current programme. This is not true.

In March 2014 JCVI recommended that the Meningitis B vaccine be included in routine immunisations. But the protracted negotiation period with Novartis in order to secure the Bexsero vaccine at an acceptable price resulted in 14 month’s worth of children, born after the recommendation was made but before immunisation began, not being protected from Meningitis B.

To vaccinate these children does not actually reflect an increased cost burden on the NHS – after all, if a price had been agreed on day one of the negotiations then the NHS would have begun vaccinating those children, no questions asked. It is not the children’s fault that negotiations took so long, they are still at increased risk of Meningitis, and they should not suffer as a result.

That’s over 900,000 children who should have been protected, but were not.

It’s worth also noting that the JCVI report on the introduction of the MenB vaccine states that a 5-12 months cost benefit scenario (ie looking at whether it was cost effective to roll our a catch up programme for 5-12 month olds) was not recommended as ‘it had not been specifically considered in the cost-effectiveness analysis’. Not that it wasn’t cost effective, it had not even been considered.

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I can accept that it may not be cost effective to roll out the vaccine on the NHS to all children up to the age of 11, especially as the real world efficacy of the vaccine is yet to be proven. However I do believe the government has a duty to protect the public from profiteering private clinics, who not only charge 2-3 times more than the NHS list price, but have also been seen to increase their prices in the wake of the increased awareness. With reports of NHS GPs split over whether they are willing or even able to offer private prescriptions to parents wiling and able to pay, I believe the government should step in to help those parents who wish to have this vaccine for their children access it at a price that reflects the real cost of the vaccine.

I’m not a medical expert. I’m not a statistician, a political advisor, an activist, a professional campaigner or a policy expert. Hell, I’m not even someone you would refer to as even remotely politically engaged, beyond a belief in the importance of always exercising my right to vote.

I’m just a mum, with a child who sits within this cohort of forgotten children. This is what I see in the evidence that is available to me. And this is why I continue to support this campaign.

I don’t know if policy will change as a result of this campaign, but I can hope that it will, with the support of all the other parents, grandparents, uncles, aunts, sisters, brothers and friends who have supported the campaign to date.

Because I believe that children deserve the right to have access to the protection that science has developed for them, should they choose to receive it.

Because I believe that right should not be based on those most able to afford inflated private clinic prices.

Some of the greatest support I’ve had as a parent has come from my online birth groups – groups of mums brought together by one great coincidence: all being pregnant and due at the same time.

Most of them I’ve never met, many of them I barely know, but I credit them all with getting me through my darkest and toughest days of parenthood – the ones where you’ve barely slept and you’re not sure how you’re going to get through the day.

Through them I’ve seen the best in other people – complete strangers coming together to celebrate the good times, and to support each other through hard times.

And through their eyes and words I’ve seen the worst in life – the kind that makes you grateful for every ounce you have, and hug your loved ones a little tighter.
On Valentine’s Day, when most of us were celebrating hearts full of love, a family from my original birth group with C had their hearts torn apart.
A beautiful little girl called Faye, the same age as C, lost her fight to Meningitis.

I didn’t know Faye – for reasons I can’t even remember our group split into a few smaller ones when we shifted onto Facebook, and her Mum ended up in another group. But she was one of those I shared pregnancy with, and that makes it feel very close to home. Just a glimpse of the pain her family must be feeling is more than I think I could bear.

Until Faye, I didn’t know that there was now a vaccine for Meningitis B.

With that vaccine, Faye could still have been here.

The Men B vaccine, Bexsero, was licensed for use in Europe in January 2013, 11 months before Faye and C were born. In March 2014, when they were 4 months old, the Joint Committee on Vaccination and Immunisation (JCVI) recommended it be introduced to the immunisation schedule. But due to negotiations over price it took until September 2015 to start being given, and then only to children born after that date. There was no catch up programme for older children – for Faye, and for C.

Today, the parents of children born before September 2015 can pay privately for the vaccine, if indeed you can find somewhere with it in stock (there is currently a nationwide shortage), at a cost of upwards of £200.

But protection from a preventable killer disease, shouldn’t be based on ability to pay.

This petition, asking the government to expand the immunisation programme, has grown from around 500 signatures to over 11,000 in the days since Faye was diagnosed with Meningitis.

That’s enough for the government to respond, however not enough to spark a debate in parliament. Without this, they may simply cite the evidence that the peak in Meningitis B infection is at around 5 months, ignoring the fact that it is still a major killer of children up to the age of 5.

I have signed, and would ask that you do too.

Thank you.

#dec13forfaye
*UPDATE 17TH FEB*

The petition has now reached over 270,000 signatures, which means it will be considered for parliamentary debate. This is fantastic – thank you all for your support!

Whilst signing the petition is still inportant, we also need to get MPs on board.

Please please please can I now ask you to write to, call, email your local MP to ask for their support for the campaign.

G does ballet and loves Elsa, pink and the girl pups from Paw Patrol, but she also grew up playing with train tracks, dumper trucks and football.

She started playing football when she was 3, at a local class called Diddikicks. She loved it so much she kept going until she turned 6 and she could join the after school football club. C has now started at Diddikicks too and is just about getting the hang of things, and enjoying it as much as her big sister did.

Other than her Diddikicks kit, G’s first football kit was a yellow and blue Sweden kit – an awesome gift from her Scandinavian cousins.

When she grew out of this and needed a new one for school we gave her a choice of country kits – Scottish like her Dad, Welsh like her Mum or English for where she was born. She chose Welsh, and I had a smug face for days, maybe even weeks.

But disaster struck, and the Wales kit went missing. I suspect foul play, but regardless, G needed a kit to wear to football club, so I stiffened my upper lip and we duly trotted off to our local sports shop to pick something up in time for her next class.

Not being a huge football fanatic myself, it had kind of passed me by that at some point G might have to choose her football allegiances. And I naively hoped we could simply skirt the issue – after all she’s still a 6 year old girl who struggles to decide what her favourite TV show or breakfast cereal is on a daily basis.

But there we were, confronted with a simple, yet baffling choice – Manchester United, Manchester City or Liverpool.

G studied the aisle carefully. She picked up one, then another, then started checking for her size, blissfully unaware of the importance of the decision she was making and how it would quite possibly stick with her for the rest of her life. And I did want this to be her decision, not mine.

“I want the red one, Mummy!” she started by saying, and so I explained to her that one of the red ones was Liverpool, and the other Manchester United, and did she have a preference?

She hesitated, hovering between the shirts, and looked up at me as if expecting me to know the answer.

“Well” I started, “I know Liverpool have a women’s team, but I have a feeling Manchester United don’t, do you want me to check?”. Suddenly reminded of something we had said previously, G piped up “which is the one we could go and see?”

“We could see any of them” I replied, “but I think we talked about maybe going to see the Manchester City women’s team.”

“That’s the one I want,” she responded, quickly finding her size on the rack and exclaiming “oh look! It even comes with socks!”

So, Manchester City it is! Unless she changes her mind of course…

Fast forward a couple of days. Picking her up in the evening after her football class, I asked her if her friends at school had liked her new kit.

“No,” she replied, “except J, as he likes City. The others all said ‘City in the bin, United win’. I told them ‘United in the bin, City win’ but they said that was made up.”

My heart sank. We’d made such an effort to ensure she hadn’t been put off things like football as a result of being a girl – had all that effort been spoilt by something so simple as picking a shirt?

“You’ll never guess what happened when I saw Mr T and Mrs E,” she continued, “they said ‘ewwww, go away!’ because they don’t like City.”

I could feel my blood rising.

Then she laughed. “It was so funny” she said, “that I couldn’t stop laughing all the way back to the hall!”

As she turned and carried on playing with her toys, still giggling away, I thought to myself “we must be doing alright at this parenting lark.”

C turned two yesterday, and apparently that means that she no longer counts as a baby, instead she’s a proper little girl.
A little girl who knows her own mind and makes damn sure you know it too, even if she doesn’t always have the words to explain it.

Who gives the best hugs and kisses (if she doesn’t blow raspberries in your face first) after demanding ‘hug-ups’ (pick up).

Who gives as good a rendition of ‘Let it Go’ and the My Little Pony theme tune as she does of ‘Wind the Bobbin Up’ and ‘Heads, Shoulders Knees and Toes’. Usually when you’re trying to get her to go to sleep.

Who starts counting from 8 at least 80% of the time (8, 9, 10, 8, 9, 10, 8…) and still insists on calling her big sister ‘Ah’ even though she’s perfectly capable of pronouncing ‘G’.

In other milestones that show how she’s growing up, she has chicken pox.

But this isn’t just chicken pox – this is full blown, head to toe, more skin with spots than without chicken pox.

Her birthday marked day 6 of being poorly, which Dr Google reliably informed us meant she’d be feeling much better and almost back to normal. Which obviously wasn’t the case given that on day 5 we’d ended up at an emergency doctors appointment with a stubborn fever, concerns over possible dehydration and a diagnosis of an infection.

So what little she ate of her birthday cake (which I must say I was pretty proud of – thank you Pinterest!) ended up being washed down with antibiotics, poor lamb.

After having felt incredibly sorry for herself – with every reason, to be fair – she thankfully had brightened up for the big day, but was still dozy enough not to mind missing what was meant to be our annual trip to the aquarium.

Instead we all spent the day playing at home, with birthday pizza for tea. Which, you know, turned out to be not such a bad way to spend it, all things considered.

One positive of all this has come – where you might least expect it – in our bedtime routine.

All of a sudden C’s decided that she doesn’t want one of us to climb in bed with her and hold her hands until she decides it’s time for sleep (all the while singing and shouting randomly – her, not us). Which as you can imagine didn’t stay cute for very long.

Instead she climbs into bed, waits to be tucked in, drinks her milk and dozes right off, saying ‘no mama in!’ if I try to cuddle up next to her.

I might miss her being my baby, but if this ‘little girl’ habit means fewer lost hours spent trying to get her off to sleep then I reckon I’ll be content with that.

There’s lots of reasons for this, and one of the lamest is not taking enough of the ‘right type’ of photos to put in my posts. I take lots of photos – like many mums probably too many – but just not enough of the ones that feel good enough and nice enough to sit on the top of a blog post.

It can be easy to get trapped behind the camera, forgetting to enjoy the moment because you’re too busy trying to capture it. And sometimes you’re just too busy watching the scene unfold before you to think to grab the camera and capture it.

A couple of months ago now we were up in Aberdeenshire for a few days for a friend’s wedding, and spent a slightly hungover post-wedding morning exploring the fabulous Duthie Park in Aberdeen. The wedding itself had taken place in the Winter Gardens there so we thought it would be nice to have a proper look around and check out the playgrounds while we were there.

The girls got stuck straight in with Daddy whilst I nipped back to the car to pick up something I’d forgotten. Crossing back over the car park, Tunnocks Caramel Wafer halfway into my mouth (a freebie from the hotel room – I’m all class), my stomach gave a lurch that wasn’t hangover induced.

A small figure was sliding towards me at a rapidly increasing speed, straight down the (not even exaggerating) 30 foot long slide on the hillside. Hey, it could even be 40 foot – I wasn’t measuring it and for once Google doesn’t seem to know, so in the absence of evidence to the contrary I think we can all agree that it was at least 50 foot long.

Ok so now I’m exaggerating, but you get the idea. It was a big slide, far too big for a one year old to be conquering on her own.

With visions of a crumpled, battered toddler screaming at the bottom of the slide I lurched towards it to rescue her. Only she was none of the above. I’d go as far to say she was quite pleased with herself, albeit a little surprised by the extent of the ride.

Daddy insists that he was trying to get onto the slide with her on his lap, the sensible father way. And knowing how she can contort herself to get out of your grasp when she has her mind on something I can believe it.

Suffice to say we’re staying away from excessively tall slides for a while, and there was no photographic evidence of the event. Instead the picture shows her reprising her stunt on a far more appropriately sized slide a few days later.

It’d been a while since we’d last taken G out on her bike – an intentionally non-girly Thomas the Tank Engine affair that we bought on eBay and that has done sterling service over the past couple of years.

But I have to confess to being taken by surprise when I realised quite how much G had grown, as I watched her trying to cycle with her knees almost up to her chin. Even with the seat and handlebars at their highest height, there was no mistaking it was time for a new bike.

So the other weekend G went to choose her early birthday present from – where else – Halfords. Because as they said last Christmas, nothing beats a bike.

I was slightly concerned that I wouldn’t be able to manoeuvre her past the ‘Frozen’ bike sat front and centre in store, but luckily all I needed to do was say “look, that one’s the same colour as Mummy’s bike” and she was sold on a very cool black and hot pink mean machine, complete with rainbow gloves and a matching Tinkerbell cycling hat. A pink basket for her doll to sit in completed the look and we were off.

I’m actually kinda jealous that my bike is missing the pink bits.

As it turned out, I shouldn’t have worried about the lure of Frozen. It was more of a challenge prizing G out of the cycle trailer that she’d set herself up in. I briefly contemplated splashing out on one so she could come out with us on family bike rides, but quickly remembered that the chances of actually making frequent use of it – however good my intentions – were slim. And apparently it doesn’t fit on the back of a motorbike anyway.

So it was that a few days later we found ourselves in Whitworth Park in Manchester, standing by watching our little speed demon doing laps of the central roundabout, waving at every person she passed and telling them all about her new bike.

I’m very pleased she enjoys her new bike so much, and I love her confidence to talk to anybody, especially because she used to be quite shy meeting new people.

But I can’t help thinking we might need to have a little chat about stranger danger, if only to spare poor random strangers the ten minute ‘conversation’ about her cycling prowess.

About a month or so ago I was involved in a car accident. Not my fault – somebody went into the back of me in a queue of stationary traffic. Luckily nobody was hurt, but one of our cars – admittedly an old, beat up runabout – was written off.

Which presented an opportunity to do the type of thing that you can talk about doing for years without ever getting round to doing.

I bought a motorbike.

I actually started riding motorbikes when I was 16, but a nearly 15 year hiatus meant that now I fitted not just into the cliche of ‘mid life crisis’ but also, at the ripe old age of 34, ‘born again biker’.

As with so many things, I had a logical, rational reason for getting a bike again. Slipping through the traffic on a bike would both halve my commute time and save a ton of money in parking and petrol.

But really, honestly, I was mostly just looking forward to getting on two wheels again.

I don’t know if it’s a function of getting older, having kids, or both, but as time has gone on I’ve found myself doing fewer and fewer of the things that made me, me.

I love my kids, and I love being a mum, but I realised that my so called hobbies were almost all things I hadn’t done for years – the required accoutrements still there, but packed away neatly in the wardrobe and the loft.

Playing musical instruments, rowing, riding horses, making jewellery, designing, drawing and painting (badly), going to gigs, and of course riding motorbikes, were all still things I considered to be part of ‘me’, but which in reality I hadn’t done more than thought about in some cases for more than a decade.

Which is a long time in anybody’s book.

So getting back onto two wheels is about more than just reclaiming an hour of my day from the drudgery of queuing in traffic.

It’s about reclaiming a piece of me, that’s still hidden inside there somewhere.

It’s about being not just a mum, but someone that hopefully my kids can be proud of, maybe even inspired by.

It’s not about them doing the things that make me happy. It’s about letting them know that they can follow their dreams and do whatever they want to do in life.

Because if I can’t manage to keep some of my dreams alive, who am I to tell them to follow theirs?

You know those annoying ‘ice breaker’ questions in meetings where you have to tell something most people don’t know about you, or something along those lines? Well my usual offering is that I’ve broken bones in all four limbs (not at the same time). And that I broke not one but three metatarsals before David Beckham made them famous.

G, in contrast, has made it to five years old with barely an incident. No need for A&E trips, stitches, bandages, plaster casts or anything like that. Hell, our first aid kit sees more use on G’s dolls than it does on any of us!

So I shouldn’t be too surprised, I guess, if C takes after her mother in ways other than her blue eyes and occasional grumpy tendencies.

A few weekends back we made a long overdue visit to see one of my oldest friends from school and her husband, in their gorgeous house – quaint village, bags of character, tons of space, sun trap garden complete with vines, apples, cherries and herbs. And some decidedly non child friendly steps between the rooms.

The steps were actually the first thing she said to me about the house. “It’s not very child friendly, we need to get some stairgates, but haven’t got them yet”, she said. “Be careful with C and the steps!” she said. Of course we listened, and we kept an eye on C with the steps.

But hell hath no fury like a small child denied the ability to climb as she likes, and, perhaps inevitably, there was eventually a tumble.

The tumble ended up with us in A&E awaiting an X-ray and subsequent cast. Yep, C had a buckle fracture in her leg.

The NHS were, of course, fantastic. Our estimated 1 hour wait was filled with my friend and I nattering away catching up whilst C dozed in one of our slings, broken short by a triage nurse exclaiming ‘I’ve been calling you!” far earlier than we expected, as we nearly lost our spot.

Sadly the dozing didn’t last, and C was, as is her way, rather unhappy about having to stay still for first the X-ray and then the temporary cast they put on. By ‘unhappy’ I mean she screamed her head off throughout and demonstrated a strength, even in the broken leg, that took all the doctors and nurses by surprise as she kicked and thrashed her way through the whole procedure.

Eventually all was sorted and we headed back to the house for some much needed rest. Thankfully C still slept well and after some initial frustration at not being able to get down and toddle round she soon became accustomed to her new footwear and rediscovered her ability to crawl at a lightning fast pace.

Back home and with a new ‘proper’ cast on (again the NHS were fab despite her protestations at, God forbid, being made to sit still for all of 5 minutes), we had the welcome news that kids of her age really do heal quickly, and got a date for the cart to be removed after just three weeks.

Apparently it was likely to have healed after two but the extra week was just to be sure, and this seems to have been proved right, as we’re now coming up to ‘cast off’ day and C is happily toddling around on her cast, far less bothered than us by the increasing whiff coming from it as we swelter in a UK wide heatwave.

Of course, despite the whole experience we still can’t keep C away from the stairs, so much so that she’s learnt how to shut the stairgate behind her as she goes up.

It’s been a while since I last blogged, but a news story I saw this morning has made me angry, and apparently that’s a good prompt to blog again!

The news today is reporting that “bogus allergy tests are convincing thousands of people to take unnecessary treatments and put themselves or their children on inadequate diets, sometimes resulting in malnutrition”. (Full story at the Guardian here).

As some of you will know, both C and myself are dairy intolerant, something which contributed to C’s poor weight gain as a baby, vomiting, stomach upsets and eczema.

If C eats something containing dairy, within about 12 hours she’s sick. Since cutting it out (under the advice of a paediatrician and nutritionist), she pretty much never vomits, and her eczema has gone away, meaning she no longer needs steroid based creams to manage it. I don’t need an allergy test to tell me that cutting out dairy is the right thing to do, and until she can manage a dairy trial without vomiting again I’ll keep on doing so.

For me, things are pretty straightforward too. I eat dairy? I get a headache. I eat a lot of dairy? I get a migraine. I don’t eat dairy? No migraines. Ta da!

Just because a food intolerance isn’t life threatening, it doesn’t mean it should be ignored.

Sure, I’m not about to go into anaphylactic shock if I eat dairy, and neither is C, but I’d prefer not to spend the next two days with a migraine, or with C throwing up all over me, thank you very much. Not when I know it can be easily and safely avoided.

Surely more people asking for ‘free from’ options at restaurants should make them more aware and careful about how they prepare and list food? It certainly shouldn’t be used as an excuse for when they trigger a reaction with an allergic (anaphylactic) customer, with sometimes devastating consequences. Allergy management should be considered equally alongside food hygiene in a restaurant environment.

Instead of suggesting that we should just put up and shut up and leave dairy free to the ‘true’ allergies – or worse, telling me I’m malnourishing my child – how about just helping everyone to be able to choose what they eat with confidence, and make it easier to find trustworthy information about intolerances, allergies and food substitutes?